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Psoriasis advocacy group testifies before Congress for more research funding
(April 19, 2005) Psoriasis Cure Now, a patient advocacy group that works on behalf of the 6.5 million Americans with psoriasis, testified today before a powerful Congressional Subcommittee in support of greater research funding for psoriasis and psoriatic arthritis. It marked the first time in years that Congress has heard testimony from the psoriasis community. Michael Paranzino, president of the group, testified before the House Appropriations Committee’s Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, the subcommittee that writes the budget for the National Institutes of Health (NIH).
“Today’s Congressional testimony by Psoriasis Cure Now is a turning point for the psoriasis community,” said Jack Nicholas, a psoriasis patient from Rochester Hills, Michigan who is active in one of the largest psoriatic arthritis message boards. “I have no doubt that when Members of Congress hear firsthand about the decade-long shortfall in psoriasis research funding, they will take corrective measures to help the millions of their constituents who are suffering with this disease.”
While NIH funding is up 99% since 1995, even after inflation, psoriasis research funding is down 8%. $6.5 million, or just one dollar per patient, is invested in psoriasis research annually. The NIH budget will approach $29 billion this year.
“Congress has doubled medical research funding in the last decade, a wonderful achievement that began right in this Subcommittee,” said Paranzino of Psoriasis Cure Now. “We think the Subcommittee will be disturbed to hear that even as they made this tremendous commitment to the health of all Americans, that millions of their constituents were shortchanged as psoriasis research funding languished.”
Psoriasis is an incurable, recurring disease of the immune system that can first strike at any age, causing dry, painful skin lesions. As many as a dozen or more genes are believed to play a role in psoriasis susceptibility. Many people with psoriasis also have psoriatic arthritis, a chronic, progressive and debilitating inflammatory disease that often causes painful joint inflammation, stiffness, tenderness and tiredness, as well as bone damage. Millions of Americans are profoundly impacted by the physical, psychological and economic impacts of psoriasis and psoriatic arthritis.
The Congressional testimony is the latest effort in Psoriasis Cure Now’s continuing national advocacy campaign. Later this week, Nicholas and his wife will visit Washington, DC and meet with their lawmakers through the group’s “Psoriasis Research Action Center,” on the web here.
“When Psoriasis Cure Now launched, they promised that they would work tenaciously on behalf of psoriasis patients in our nation’s capital,” Nicholas added. “They have delivered. From today’s historic Congressional testimony to the meetings with our lawmakers they have arranged and will attend with us this week, they are showing what can be done when skill and passion are merged. I hope all psoriasis patients who plan on visiting Washington, DC in the months ahead will first contact Psoriasis Cure Now and set aside two hours to be ‘citizen lobbyists’ when they arrive.”
Paranzino’s Congressional testimony is available here.
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